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Little Tears, Big Fears Working With Children Experiencing

Anticipatory Grief

C. Caryn Kondo, MSW

Clinical Director New Song Center

Jenni Rogers, MS, CCLS

Child Life Supervisor HonorHealth

How do you feel?

Understanding Anticipatory Grief

The complex interaction between feelings,

thoughts, and physical reactions to

learning and living when someone we love

is dying.

Factors that Influence Grief

Culture and Spirituality

Nature of Illness and Death

Past Experiences and Losses

Relationship to Person

Personality

Developmental Stage

Parental Attitudes and Communication

Child

Child

Child

Complex Involvement

Patient

Support

Extended

Family

Caregiver Medical

Team

Important Parenting Considerations

The overwhelming need for parents to

continue to be active and purposeful to

their family.

› Piloting: Navigating through the challenges

› Providing: Giving in order to meet family needs

› Protecting: keeping the family safe

› Preserving: Maintaining roles and functioning

*Price, et al. International Journal of Nursing Studies (48), 2011

Children and Anticipatory Grief

The journey from diagnosis to dying is often

filled with complex emotions and stressful

challenges for all family members.

There is no clear or consistent road map for this

challenging journey.

Understanding the connection between

the challenges and needs for children

is important.

Children especially have many needs in helping

them navigate.

Importance of Assessment

“How are the kids doing?” vs

“There have been a lot of changes happening lately, do you mind sharing with

me what that has been like for your kids?” “If the kids were here, what would they say

has been going on? How would they

describe (the situation)?”

A Word About Temperament

“Type A” “rule followers” “high achievement standards for themselves

and others” “don’t really show emotions too much” “really holding us all together”

“The more emotional one” “we know when they are mad, sad, happy” “easy going” “haven’t been home very much”

Complex Challenges

Exploring the complex challenges families

face provides a more complete picture and

approach to understanding and working

with children when family member is

dying.

Complex Challenges Dealing with Changes

Experiencing High Emotional Stress

Maintaining Family Roles /Responsibilities

Finding Support

Managing Multiple Compounding Losses

Moving On…..Letting Go

Challenges and Needs

In order to face these challenges in a way

that allows for healthy growth and coping;

children have to have their primary needs

met.

Primary Needs for Children

To Experience Security and Safety

To be Told the Truth

To Express Themselves

To be an active family member

Remain a Child

Developmental Considerations

Infants to Toddlers (0-4)

Young School-age (5-8)

Older School-age (9-12)

Teens (13-18)

Young Adults (18-21)

Phases of Anticipatory Grief

1. Illness and Diagnosis Explaining illness and disease to children.

• “We just found out that Mom has a big sickness that she may not get better like other little illnesses. It is called____________.”

2. Treatment Phase When Working hard to get healthy isn’t

working. • “The medicine Mom was taking is not working to

stop the illness. The sickness is making her body very weak. We going to make sure she is in no pain.”

Phases of Anticipatory Grief

3. Terminal Phase

Explaining Death to Children in age

appropriate ways.

• “Mom is having a very hard time. Her body is going to stop working. She may not respond to

you, but keep talking she knows you are here.”

4. Dying

Including and preparing children for the

process very important.

• “It looks like we do not have much time; what would you like to do to say good bye to mom?”

Answering Difficult Questions

Is it ok for me to cry in

front of my child?

Are there

words/phrases I

should avoid?

How much should I

tell my child?

How do I prepare

them for the hospital

visit?

What if my child asks

if I am going to die?

How do I answer if

they ask why this is

happening?

How involved or

notification do they

want?

Step By Step Disclosure

1. What does child know?

2. Do they understand basic human body?

3. How is the disease impacting body?

4. How did treatment & medications impact

the body?

5. What is happening now?

The elephant in the room…

Are they going to die?

Creating Conversations

What have been common barriers to

creating conversations between parents

and children?

Encouraging Coping

Tap into past positive coping style

Understanding the silent treatment

Be Creative

Keep asking questions and checking in

Give them positive and helpful “jobs” Help parents to choose their battles and

be a safe place

Allowing for Creative Expression

Ways to help Children Express their Emotions Safely:

• Use play, art, music and movement.

• Make an anger pillow to work out frustrations.

• Use clay to work through emotions.

• Bang pool noodle on ground.

• Create an art journal.

• Keep active children active.

• Give children choices when they are available.

• Make time for normal activities.

What Adults Can Do:

Be a Good Listener: Children need love, support and guidance. Being

Listened to is healing.

Be Reassuring: Acceptance and reassurance helps children feel safe

and secure.

Be Honest: Honest and open communication leads to greater trust

and healing.

Be Flexible: Allow for some rule breaks.

What Adults Can Do:

Be Patient: Working through anticipatory grief challenges takes

time.

Be Aware: Find time to focus on the child. Watch their behavior

and monitor any changes or red flags.

Be Open: Allow for the expression of their feelings in as many

different ways as possible. Give them choices. Seek

out assistance when you need it.

Encouraging Legacy

Photograph

› Day to Day life

› Activities

Voice Recordings

Tangible items (lovey)

Cooking together/recipes

Use caution with cards and letters

Top Ten Guidelines for Helpers

10. Always remember to take care of yourself.

9. Know your comfort level.

8. Bring age appropriate toys, games, supplies.

7. Remember that children are not small adults.

6. Put yourself at child’s level. 5. Accept and respect child’s emotional state. 4. Talk to the child, not at or about them.

3. Be able to play.

2. Take your cues from the child.

1. Always be honest and real.

Toolbox of Toys

Create your own tool box of child friendly

supplies and activities.

› Basic human body book

› Model Magic

› Markers/Crayons/Coloring Sheets

› Scavenger Hunt with Bugs

› Crocodile Dentist

› Uno

Book Resources

Adults: › How to Help Children through a Parent’s Serious Illness by

Kathleen McCue

› Preparing the Children: Information and ideas for Families

Facing Terminal Illness by Kathy Nussbaum

› A Tiny Boat at Sea by Izetta Smith

Children: › Lifetimes: The beautiful way to explain death to children by

Bryan Mellonie

› Waterbugs and Dragonflies:Explaining Death to Young Children

by Doris Stickney

› When Death Walks In by Mark Scrivani (teens)

How do you feel now?